Please read the article embedded in this post to FreeGaza. In my unprofessional opinion, if you feel you must have an infusion then ask for Iron Dextran. Dextrose is a single molecule sugar that theoretically should be able to cross the BBB. Injectafer and iron sucrose, in my humble opinion, don’t stand a chance.
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Hidden profile imageHiddenFreegaza786
2 months ago
That just seems so wrong and so unhealthy. But that’s just my visceral reaction to that image. I highly doubt any of that iron will cross the blood brain barrier and the science seems to agree with me. ncbi.nlm.nih.gov/pmc/articl...
At least when you consume not very bioavailable iron orally you stand a chance of some of it being broken down into amino acids via digestion that then stands a chance of crossing the BBB. Once in the bloodstream via infusion there’s no digestion or breaking down of the iron, as far as I know. The very last paragraph of the article suggests what has to be done to the infusion formulation in order for it to be helpful for RLS. For now, stick with oral iron.
These infusions, including Injectafer, were clearly not designed with RLS in mind. The intent was to get bodily stores of iron up. I was told that people who have a condition called Pica, that was brought on by iron deficiency anemia, are cured of their cravings for things like ice, clay and paper, the very day they get the infusion. Why isn’t our RLS better that first night or the first few days thereafter?
Also, if our brains have trouble calling up iron from stores of say around 50, I dont understand why it should be any easier if your stores are 75 or 100 or 500. Guess what, the RLS experts can’t explain it either. I think I can. People with RLS generally claim relief somewhere between 6 weeks and 6 months after infusion. During this time they probably added or subtracted something from their RLS regimen, and I propose that is what is providing them with the new found relief, not the infusion.
I wonder if anyone ever got an infusion and found their RLS was worse? That would make more sense to me than better. That infusion is going to cause your hepcidin to sky rocket, probably including in your brain, where we with RLS supposedly already have too much. That elevated hepcidin from the infusion will make it that much harder for iron to get into our brains, at least for a few weeks I’m thinking?
My understanding is if you’re truly anemic, or very very low on iron, then that anemia acts as almost a kill switch for the hepcidin. So if you’re anemic, you can even take iron three times a day and each subsequent dose will be absorbed as well as the first, whereas people with ferritin in the normal range, should put 24 hours between doses to maximize absorption by waiting until the extra hepcidin from the previous dose has mostly dissipated. It’s totally unnecessary to put 48 hours in-between doses as is suggested on here. I bet my little iron at night trick won’t even work if your ferritin is much over 100 or 150 for men. High ferritin =high hepcidin.
Of the three iron infusions i have had, one was low molecular weight iron dextran.
My sleep specialist suggested it specifically for its potential to cross the blood brain barrier.
Unfortunately, I seem to be one of the ones that iron infusions don't help appreciably.
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I know that mild or moderate RLS is better than severe, but even mild RLS keeps me from sleeping. The only difference is I’m not kicking and punching the walls. So unless that infusion is a home run and a home run the vast majority of the time I’m not gonna try it and I’m not recommending it. I don’t understand how or why it works for anyone ever.
Several people on here have said caffeine is a home run for them each and every time. Some say the same for aspirin. So I’ll recommend those two things. The aspirin makes sense to me because I read that heparin (a blood thinner) is one of the few hepcidin antagonists the scientific community has discovered. onlinelibrary.wiley.com/doi... We with RLS probably want less hepcidin, especially in our brains, where allegedly there is too much. Less hepcidin in our bodies should translate to more iron for our brains.
We’re talking molecules here. We just need a few more molecules of iron entering our brains at night. We don’t need a one time shot of 1500mg of an iron that stands no chance of crossing the BBB. And that infusion will raise hepcidin (albeit temporarily) to heights probably previously unknown by your body. I can’t figure out how people don’t have insane RLS for the first few nights after an infusion. I know FreeGaza did, but everyone should.
As you can tell from that one paragraph article, there is no mention of RLS, yet we know that hepcidin plays a role. That’s why I tell people to stop waiting for the RLS experts to help us and to look for answers ourselves. If I had intractable RLS and hadn’t slept in a month I would beg my neurologist to let me try heparin for 3 days. The point is, the cavalry isn’t coming. We on here have made way more important discoveries than the so-called RLS experts.
EDIT: I’ll put an article where my mouth is. First an excerpt:
“ Hepcidin decreases the level of iron by reducing dietary absorption and inhibiting iron release from cellular storage. Hepcidin production increases when iron levels rise above the normal range of 65 to 175 mcg/dL in males and 50 to 170 mcg/dL in females.Apr 21, 2022” ncbi.nlm.nih.gov/books/NBK5...
Infusion? Feeling lucky? I would only go for an infusion if my life depended on it. Anyone with RLS and ferritin of around 75 is doing great. For all we know lower ferritin levels, which means less hepcidin and more serum iron, might be the way to go. Bloodletting anyone?
Good to see you back again. However, the ferrous bisglycinate at night doesn't work for everyone. I'm one of them. There are many others for whom it doesn't work.
Also, Injectafer infusions DO work for many. This person for example.
Dr Buchfuhrer still recommends Injectafer infusions and, although you disagree with his views on many RLS issues, he does resolve RLS for thousands of his patients.
I appreciate all the research you have done in this area, but, as you know, what works for some with RLS doesn't work for everyone.
The patient’s severity score was reduced to 8-20. Still unacceptably high. Plus she was still on buprenorphine with freedom to take other opiates as needed. Sample size was too small and results not significant enough to consider pushing other patients’ ferritin into the 450 to 550 range.
The ferrous bisglycinate does not work for all, just most. For those to whom it does work it is complete relief for the rest of their days unlike your posted article. It should be suggested first to new members without exception and not as a “try oral iron every other day on an empty stomach.” The phenomena and reasoning behind it should be explained as well as the fact that if it doesn’t work that first night or two then they can take iron any which way in an effort to raise ferritin.
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